Tuesday 27 March 2012

A Not Very Mysterious Medical Mystery

Tricky times to write about abject NHS failures, but that's what I started writing for.

Last May, I posted this : http://diaryofabenefitscrounger.blogspot.co.uk/2011/05/this-is-what-fight-costs-us.html I'd come down with a racking cough, I was exhausted, had fevers, night sweats and had started losing weight. We put it down to my dodgy immunity, arranged some anti-biotics and I carried on. But it came back. And back. And back. And back. The crisis came here http://diaryofabenefitscrounger.blogspot.co.uk/2012/01/so-how-am-i.html when I got rushed into hospital with a raging fever, my face the size of a football and a cough that made me choke, unable to gasp for breath.

Last October, I posted this : http://diaryofabenefitscrounger.blogspot.co.uk/2011/10/diagnosis-challenge.html
My hubby had :

-Chills that make the bed shake-Breathlessness/Difficulty breathing
-Chest Pains - across whole chest, worse on breathing in
-He is grey with huge black circles under his eyes
-Sweats so bad, the bed is drenched and has to be changed
-Exhaustion - like when you've just had surgery. He's been asleep for the best part of this week

It's never really gone away. He's still getting chest pains, night sweats and has a permanent, racking cough. They said he was "just depressed"

Since New Year, my 7 year old has had a "chest infection" that just won't clear. He got paler and paler, skinnier and skinnier. I wash his bedding every other day as the sheets are often drenched. FINALLY, the local surgery listened to his chest AGAIN "Oh dear, that sounds rather dreadful" and sent him for an X-ray. Guess what? His lungs were badly infected everywhere. they're saying he's had pneumonia. Hubby didn't even get an X-Ray. My X-Rays wouldn't show anything much either way because of the cocophany of immuno-suppressants I take.

Here is the front page of my chemo-shot website : http://www.humira.com/ Please note, the following disclaimer is NOT just a standard part of a drug insert warning of every possible side effect under the sun. It is on the front page. In bold type :

"Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB."

Here's some more info : " In HIV and other immunosuppressed persons, any abnormality may indicate TB or the chest X-ray may even appear entirely normal.[1]"

But what did my local hospital do? Laughed at me, refused to test me for TB, sent me home and then sent me this follow up letter :

..."it may have been suggested while you were an in-patient that we would follow up on your care as an out-patient. We do not feel this is necessary."

So they wouldn't even see me again!!! I've had a persistent cough, weight loss, night sweats and low grade fevers for 10 MONTHS!!! Now, Addenbrookes must do their job instead and have started the drawn out process of trying to arrange tests, scans and specialists from 130 miles away. I weigh 6 stone 6 by the way which makes "weight loss" a little more scary than it would for most people. 

Last week, I started coughing again. Bringing up muck, bubbly little fevers. But hey, I'm fine. Nothing to see here, move along. 

So my question is, would someone please pay me 100k or so a year to be a doctor? Because I'm seriously beginning to wonder exactly what the point of our local lot IS. 


  1. Came off the stuff 2 yrs ago due to legs covered in rashes (rheumatoid)

  2. Seriously terrifying! But sadly not a surprise. I wish you all well and hope you feel better soon. I'm a big fan of your blog and twitter, thanks for keeping us up to date with events


  3. As a kidney transplant patient on 2 imunosuppressants (amongst a cocktail of other drugs) I don't even dare read my drug leaflets properly as they are so SCARY!
    My ongoing symptoms/side effects are numerous - went to GP this morning (6 months of sinus and nose and throat problems) had to see someone new who obviously got bored with my - time consuming - explanations and was told to " hurry up and fast forward to your problem"!
    Perhaps I should be grateful - I finally got a nose swab!

  4. So sorry you and the family are so unwell. Hope it gets sorted for you. Not a good sign of the times when patients who know their bodies most are ignored or dismissed as neurotic and time wasting.

  5. I had TB as a kid and nothing surprises any more sue the days of seeing a good doctor outside of the queens doctors is very rare

  6. Sue I do hope you can find someone to listen to you. After 54 years of respiratory infections and a scary PE I was finally diagnosed initially with severe Asthma. My new respiratory consultant also asked me about my general health and listened when I said that I always caught everyone else's bugs/viruses. To cut a long story short he ran extra tests that ended up with me being sent from Edinburgh to Newcastle to see a renowned Immunologist. A primary Immunodeficiency was found and I'm now being treated. I know that I was very lucky and also given priority as a carer.Also and as it is hereditary my kids will be tested. All because a consultant listened to me.My tip, carry on being a persistent pest with the medic's, remind them that you need to be as well as possible not just for your sake but your family as well. Some times they forget that patients have lives too.

    1. Triple w0rd on this: I know people think privatising the NHS will improve this sort of thing but it won't. Seriously, it won't. Being dismissive of symptoms is the first port of call for doctors who are convinced everyone is a worried well. That happens whether or not they're paid up front.

      I had to pester for several years to get a decent GP and it was still after the third hospitalisation (with the realisation that I was a carer as well and not just being 'dramatic' about needing help at home) the consultant took everything very seriously and ran an exhaustive battery of tests - tests I couldn't have afforded if the system was like the US. They pointed to the sero-neg arthritis and now GPs listen when I have an issue or complaint. My country doc is incredible; if docs were all like rural doctors again, things would improve. But only if they don't have targets and are micromanaged by people with no interest in health.

  7. It used to be that generally most GPs were reasonable to good. These days a good GP is the exception.

  8. I sympathise Sue...i've had a similar problem being on embrel entanercept injections...one of the side effects is tb...and although i have had symptoms of tb no~one is testing me for it or taking my complaints seriously... i feel b****y awful...hope your all feeling better( under the circumstances) soon. ST

  9. That's terrible to have such a bad medical system!!!

  10. I wonder if we would get poor treatment if we were actually paying for it. I doubt it !!

    I am currently on the merry-go-round of diagnosis. I have numerous problems and was sent to a cardiologist. He sent me to a neurologist. He sent me to a respiritorist. Each time I see one consultant after another they completely disagree with the previous diagnosis and treatment and send me on to see someone else.

    Mean time my condition has worsened and my treatment has been changed over 30 times. This has been going on since 2006. Still no acurate diagnosis which doesnt help when I have to fill out the ATOS forms who like conditions in black and white.

    Today I was at my gps with a friend who is waiting for a liver op. She has been waiting since 2009 and has been violently sick each day since.

    Out of interest she asked the receptionist how long it would take for her operation if she paid for it privately. The lady made a couple of phone calls and was told she could have it next week and it would be performed by the same surgeon she is waiting for.

    She asked my friend if she wanted to book it but she said she was only interested and would wait. The receptionist then said she didnt think she looked like the type of person who would go private as she didnt look like she would be able to pay.

    As the saying goes money talks and how the other half live. I expect the waiting times for us poor people that cant afford the private costs will get worse and probably the service will match. It is a bad time to be ill and poor in this country.

    1. You should talk to people in the US about the crap service they get when they pay for it.
      And we do pay for it - that's what our taxes are for.

  11. Sue, did you not have a TB screen before starting the Humira? I was informed that it was a requirement before being prescribed. My follow up care is oviously much more together than yours, but then I'm 5 minutes walk from a major Gastro-unit. Your local bods may have very little concept of your condition or the medication you are taking and need to be conviced of the seriousness of the slightest infection. Go and lie on a bed somewhere and refuse to move until someone does take it seriously.

  12. Hi Sue, first-time commenter here. Your post has terrified me. I too have experienced awful delays in receiving proper diagnoses and treatments, but until now I had put that down to the area I live in, whose MP is notorious for her dim views of benefit claimants such as myself. Due to my condition, I am in and out of contact with the "real world", so I had always assumed that I was an isolated case falling through a few cracks in the system.

    But the incompetence your family has been faced with was inconceivable to me. How could a doctor ignore or dismiss a list of symptoms as long as that? I had great faith in doctors, but reading about your experience has shaken that faith greatly. These are not cracks, these are gaping holes, and I am not so isolated as I thought I was. This is horrifying.

    My heart goes out to you and yours. I hope you all receive the treatment you need, and that health finds you all again soon. Please keep writing - and thank you, thank you, thank you for opening my eyes to this.

  13. Sue, your local hospital sounds awful. I'm on Infliximab and my doctors were incredibly careful about testing me for everything under the sun, including TB, first. And they monitor my bloods all the time.

  14. Hi Sue

    Sorry to hear about your family health problems I hope you are all on the mend soon. I know what you mean about "local" hospital mine in Stevenage nearly killed me twice by misdiagnosing blood clots and left my injury to become permanent disability.

    Good luck with Addenbrookes I go there for specialist treatment as its a specialist centre for my condition. I've been going there for 12 years and found it excellent, like its a different health service!!

    Not sure if you have been to Addenbrookes before; if you need to park in the multi-story car park there is a shuttle bus to out patients about every 15-20 minutes which is fully accessible.

    Best wishes

  15. Speaking of NHS treatment, almost 2 years ago I had my appendix removed in hospital, for days I was unable to move out my bed due to the pain, was throwing up constantly and was unable to cope as I have mental health issues. Anyway I had to struggle to get someone to change some of my sheets that had sick on them, they took the worse off ones, but it was a fight in a half to get someone to care.

    Then to make things worse. As I have mental health issues, one of the staff members was talking down to me like I was stupid infront of my family no less which prompted my parents to complain.

    The care was alright, no problems there but on many occasions it felt like I was being ignored due to being the problem patient lol

    1. Oh and god forbid, asking for water initially took ages to get something. Dying of thirst with one of those drips in my arm, my mouth was all sore. Family had to bring me in drinks as again it was a fight in a half to get someone to actually get me some water, even when politely saying please.

      I was actually greatful to myself after about 4 days when I was able to move out of bed and do some things for myself, the general attitude there was kinda poor. It wasnt my fault I had issues, only a few nurses were nice there.

      Needless to say my experience put me off hospitals for life.

      Forgot to mention but I had a serious ish infection around the area which was horrible.

  16. Hi Sue, I am not at all surprised that your Doctors are not listening to you . Before my daughters started school in France they had to have a TB test, vaccination and get a certificate. We had to go to the Chest clinic at Addenbrooks. My crap uk GP practice refused to refer us until the school wrote to him.

    from - http://www.cks.nhs.uk/tuberculosis#-367037

    Tuberculosis (including people with HIV) assessment & referral - Management
    When should I suspect active tuberculosis?

    Suspect active tuberculosis (TB) in anyone who is at high risk for TB and has symptoms of weight loss, fever, night sweats, anorexia, or malaise.
    Consider pulmonary involvement if the person has a cough that persists for more than 3 weeks, and which may be associated with sputum, breathlessness, or haemoptysis.
    Consider extrapulmonary involvement if the person has symptoms such as:
    Swollen neck glands (cervical lymphadenitis).
    Bone pain, joint pain and swelling, or back pain (especially the spine).
    Abdominal pain.
    Confusion, visual problems, or persistent headache (cerebral TB).
    Skin lesions (e.g. erythema nodosum, lupus vulgaris affecting the face).
    Breathlessness, chest pain, or ankle swelling (TB pericarditis).
    People from ethnic minority groups or with HIV are more likely to present with extrapulmonary TB.

    If I was you I would print this out and ask in writing your GP's reasons for refusing testing.
    You spend so much time in hospitals which are full of sick coughing people your family could all have been exposed

    Lastly contact Chris Greyling and let him know that you coughed all over him during your 45 min chat before Newsnight but you are having issues with your family getting tested even though you all have clincal symptoms! I wonder how fast he could get tested!

  17. Oh the irony of Chris Grayling catching TB from you, Sue. I hope you did have a good cough in his presence.

  18. I was particularly infected with whatever this mysterious lurgy is, and he DID talk at me for 45 minutes.

    I don't particularly wish ill on anyone, but that would be an irony too delicious.

    It would be the wrath of Keats!

  19. HEllo, Not sure if im right but you have IBD dont you? Just wondering if you know about GI monitor/er? ITs a fantastic app